On Friday, the Senate passed the Henrietta Lacks Enhancing Cancer Research Act requiring the Government Accountability Office to investigate federally funded cancer trials and outline options to make them more racially inclusive. The act addresses the problem of racial and ethnic diversity in cancer research. It was the subject of my recent column.
The late Rep. Elijah Cummings, who had lived with a rare form of cancer for many years, introduced the bill seven months prior to his death at age 68 in October 2019. His succesor in the House, Kweisi Mfume (above), took it up there, where it passed last week. Sen. Chris Van Hollen led it through the Senate. The full announcement from Van Hollen’s office follows:
WASHINGTON – Today, the U.S. Senate passed the Henrietta Lacks Enhancing Cancer Research Act, legislation introduced by Senator Chris Van Hollen (D-Md.) to honor the extraordinary life and legacy of Henrietta Lacks and examine access to government-funded cancer clinical trials for traditionally underrepresented groups. Senator Van Hollen initially introduced this legislation alongside the late Congressman Elijah Cummings, and it has since been taken on by Representative Kweisi Mfume. The legislation is also cosponsored by Senator Ben Cardin, Congressman Dutch Ruppersberger, and Congressman John Sarbanes. The legislation passed the House of Representatives on December 9th and will now head to the President’s desk.
Lacks, a Black woman, died of cervical cancer in 1951. During her cancer treatment, doctors took samples of her tumor, and from this the HeLa cell line was created. Without her or her family’s knowledge, her cells were used in medical research and helped lead to some of medicine’s most important breakthroughs, including the development of the polio vaccine, along with treatments for cancer, HIV/AIDS, leukemia, and Parkinson’s disease.
“For too long Henrietta Lacks’ story went untold. While our nation will never be able to adequately express its gratitude for her historic contributions to medical research and the countless lives her cells have saved, this legislation is a step in the right direction. This bill, named in memory of her contributions to medical research, will help ensure that all people – especially those from communities of color – are fairly represented in cancer trials and ultimately receive the treatments they deserve. I was honored to originally introduce this legislation alongside my friend, Elijah Cummings, and I know its bipartisan passage today would do him proud. I urge the President to sign this into law immediately,” said Senator Van Hollen.
“Tonight my family stands proud to learn of the passage of the Henrietta Lacks Enhancing Cancer Research Act and applauds Senator Van Hollen for his leadership,” said Lawrence Lacks, Sr., Henrietta Lacks’ eldest son. “In life, she was my loving mother, and in death, she unknowingly became the Mother of Modern Medicine. My mother’s HeLa cells were taken without her knowledge or consent – her contributions once hidden, are now being rightfully honored for their global impact. As the world celebrates Henrietta Lacks’ 100th birthday this year, it is only fitting that this law builds upon her legacy by ensuring equitable access to advances in cancer treatment for all people.”
“This legislation is an opportunity to help address barriers that minority and low-income communities may face when attempting to participate in federally funded clinical cancer trials. Overcoming those barriers and guaranteeing robust enrollment and representation of diverse communities is absolutely critical to the success of clinical cancer trials,” said Senator Cardin. “Some people’s contributions are measured by the number of lives they touched, and others by lives they saved. You can measure the contributions of Henrietta Lacks in both ways, and the totals will continue to increase far into the future, as more and more families are spared the loss of their loved ones owing to the medical advances that Ms. Lacks enabled.”
“It’s an honor to help elevate this issue and work with my Maryland colleagues to get it through the House. Today we took another step towards advancing the work of our dear friend the late Congressman Elijah Cummings and paying respect to the legacy of Henrietta Lacks. I commend our Senate colleagues for passing this legislation and look forward to sending it to the president to be signed into law,” said Congressman Mfume.
Despite the progress that Lacks’ cells helped to achieve, many communities still face glaring health disparities. For example, while cancer incidence rates are highest among Non-Hispanic White females, Non-Hispanic Black females have the highest death rates. Clinical trials are a key component to advancing cancer research and treatment. Currently, about 20 percent of cancer clinical trials fail because of lack of patient enrollment, with racial and ethnic minorities, and older, rural, and lower-income Americans generally underrepresented in such trials.
The Henrietta Lacks Enhancing Cancer Research Act would direct the Government Accountability Office to study and publish a report regarding barriers to participation in federally funded cancer clinical trials by populations that have been traditionally underrepresented in such trials.